Epistemically Challenged: Julie Rehmeyer

Epistemically Challenged: Julie Rehmeyer

Epistemically Challenged is an opinion series about how each one of us explores knowledge. In this installment, we spoke to award-winning math and science writer Julie Rehmeyer.

My thinking about science has been very strongly affected by my experience with chronic fatigue syndrome (CFS). Science has not served this illness well at all, and as a result, my perspective on the illness has been pushed from, “Okay, I’m going to use science to get better!” to “Wow—science is pretty shitty here.” I haven’t had have the luxury of saying, “Fine, I’m going to go work on something where the science is better.” I had to get better.

The experience has made me far less trusting of the institutions of science, and that has affected how I look at science more broadly. The CDC [Centers for Disease Control and Prevention], for example, has made some pretty big mistakes in handling CFS, mistakes that continue to hurt patients. For example, they created and pushed and continue to use a really broad definition of the disease that includes lots of patients whose primary problem is depression, or who may be just tired and stressed. Their definition doesn’t require the symptoms that are especially characteristic of the illness, particularly the way that too much exertion makes patients really, really sick (and for severely ill patients, by the way, “too much exertion” can mean brushing their teeth).

The CDC’s definition meant that ten times as many people qualified as having the disease—2.5 percent of the population! That has really confused the research, leading to findings that make it look like CFS is all in people’s heads. The CDC has also done a terrible job of educating physicians about the disease, recommending exercise and therapy prominently but pretty much nothing else. They even suggest that gradually increasing exercise can get bedbound patients back to daily functioning, though even the most optimistic studies show that to be unrealistic, and worse, exercise can permanently injure CFS patients unless done with extraordinary care.

And the problems go way beyond the CDC. In 2011, The Lancet published a study claiming that graded exercise therapy and cognitive behavioral therapy are “effective treatments” for chronic fatigue syndrome and often lead to recovery, and the media trumpeted these findings around the world. Pretty much every mainstream scientific institution endorses this work. But when you dig down into the details, you find that the data doesn’t support the researchers’ claims. The most amazing problem (among many) is that “recovery” was defined so loosely that patients could get sicker over the course of the study and still be said to have recovered! But this study is considered top notch, gold standard work. The media has fallen down here too—no article in the mainstream media has ever seriously analyzed this study, even though patients are being injured by it regularly.

The whole thing has been really shocking for me. It’s had a huge impact on my perspective on science and the world as a whole, and there are a lot of controversial issues where my emotional stance has changed in a really big way. It doesn’t affect me so much on an intellectual level, on how I evaluate things; but I often find that my emotional standing is with the people who are perceived as anti-scientific.

Take something like GMOs. I’m pretty convinced that the direct health risks from GMOs are low; however, I get really, really pissed off at those articles that criticize people who oppose GMOs for being unscientific, the ones that say these anti-GMO people should just shut up and get on the band wagon, and that if they oppose GMOs, they’re as unscientific as climate deniers.

First of all, it’s a really complicated issue with a very different character from climate science. There’s no credible scientific position that climate change isn’t happening or isn’t caused by human activity. But with GMOs, there are so many different facets to deciding whether they’re a good thing and whether it’s a good idea to eat them. Scientists, and ordinary people, disagree on which of those factors matters most. My take on the science is that yes, it’s unlikely that genetic modification inherently makes food unsafe, but I do think people’s health concerns about the increased use of glyphosate on Roundup-ready crops are reasonable. And then there are environmental and social concerns that are very real and very complex.

On an emotional level, though, I think about a patient with CFS deciding about this. If you’re that person, what is your experience with the world? Your experience is that the scientific establishment has treated you badly. You’re sick and you don’t know why and you don’t know what to do about it. Having seen what the CDC has done with CFS, you don’t trust their advice or research. You’ve seen friends injuredfollowing the advice of respected doctors to do graded exercise therapy, and you’ve learned to keep yourself safe by relying extensively on the experiences of your fellow patients rather than purported experts. You seem to be more vulnerable than most people to all kinds of things—so something could be safe for 99.9 percent of people and not safe for you.

Is it unreasonable or irrational or unscientific for you to say you don’t want to eat GMOs? I don’t think so.

The place this gets a lot more tricky is with vaccines. All those arguments that I just made apply to vaccines. If you’ve got CFS and you’ve got two kids who are also getting sick, do you want to vaccinate them? You know you and your kids have got some kind of neuroimmune problem, and you’ve heard a lot about vaccines causing neuroimmune problems. Not only do you not trust the CDC, more generally, you’ve learned to mistrust science with an agenda. The forcefulness of the pro-vaccine side increases your suspicion, leaving little room for a rational discussion of the risks—risks that may apply disproportionately to your children. Giving your kids vaccines is actually a really frightening decision. It’s a hard thing to do.

But at the same time, who the hell do you believe? Maybe your kids are more likely to be hurt if they do get some nasty bug. Maybe they’re not more vulnerable to problems from vaccines—after all, it’s really hard to figure out who is vulnerable.

And of course, this is a circumstance where the ramifications of your decision go far beyond you and your children. Making a good decision about vaccines really matters, for all of us.

That’s all a preamble to the problem of knowledge that’s on my mind: How do we evaluate as individuals the significance of science? How do we do it in the context of incomplete knowledge and insufficient time—and with the Internet providing every opinion you might want to find?

We do it by relying on people that we trust, more or less. But how do you figure out who to trust? I’m curious about this partly on the individual level, thinking about how to make these decisions better, and also on the societal level, wanting to understand this process better in order to influence it more effectively.

I feel like scientifically minded people very often take the attitude of, “Well, you should do what the science says. That’s the answer. You should do what science says, because you know, scientists are smarter than you. They’ve looked into it more than you have, they’ve thought about it carefully.” When you’re a scientifically minded person who has been more or less in the mainstream of life—you haven’t been forced into a scientific swamp like CFS—that argument can feel compelling. But there are a lot of people who don’t fall into that category, and it’s clear that they don’t find that argument compelling at all. And really, they don’t have that luxury.

The perspective that I’m coming from with my experience of chronic fatigue syndrome is a fairly extreme one because CFS patients have been so mistreated and science has functioned so poorly for them. But there are a lot of people who have reasons—good reasons—for being suspicious of mainstream scientific opinions. And really, we should all have a degree of suspicion. Think of the results of John Ioannadis, who has found that nearly half of the highest-quality medical studies are likely to be wrong. It’s shocking and scary. Or think of nutrition research, and how the federal agencies strongly pushed a low-fat, high-carbohydrate diet for decades, even after research made it clear that that was lousy advice. Science is hugely valuable, but it’s also hugely difficult, and skepticism and humility are essential to its good functioning.

And frankly, even if people are skeptical of scientific findings to a degree that seems inappropriate, that attitude is probably not coming from stupidity or pig-headedness. It’s often coming from a different set of experiences, a different set of needs—participation in a culture with different attitudes. Those of us who value science need to understand their perspective better, and that understanding needs to grow out of a place of huge compassion. You’ve got to enter their world and figure out their decision-making processes, rather than saying “Okay, you people come over to my world, where it’s all really simple and clear.”

28 Comments

Honeybee
on September 9, 2015 at 1:50 am

Thank you Julie Rehmeyer for an article that brings out some very excellent points with regards to how science has not served the ME community well. Let’s hope that those that need to hear start listening.

This is brilliant. Thank you for articulating what so many of us have gone through, especially those of us with backgrounds in science. You can get caught up trying to be an expert in every field of medicine, since there are few others on whom you can rely; but of course this isn’t realistic or reasonable. Instead, you create a network of ill researchers whose understanding of science you trust, and you become a scientific community, if your thinking hasn’t degraded too badly by the time you find them.

If you had asked me before I got really sick who it was who would post long, involved conversations about medicine online, I would never have anticipated the quality, intellectualism, and professionalism represented by the ME/CFS community. Everything they state is cited, everyone is trying new things and reporting back, there are few post hoc arguments, remarkably little jumping to conclusions… which is more than I can say for some of the ‘research’ I read! I have never spoken with people who are more determined and intelligent – and involved! Mady Hornig and Ian Lipkin’s ‘Chili Challenge’ at Cornell was… memorable.

I listened recently to a podcast about citizen medicine: people designing their own prostheses, heart valves. While our understanding of scientific principles and medicine continue to expand, I hope we keep in mind that it is not demigods who occupy these roles, but people just as fallible as we are. Or, put another way, we are just as capable of challenging the established information and understanding what’s out there.

I agree with pretty well everything here, I only differ on minor nuances. I have been saying similar things for years now. I am less sure that the problem is with science, than it is with the interface between science and bureaucracy, or science and politics, or science and financial or career interests. The media is broken, but then again the number of doctors who believe poor science (and maybe even pseudoscience) makes me doubt the ability of most in the profession to effectively read the science. Something is wrong in the way doctors are trained and operate. Not all doctors, but probably the majority. Yet we must keep in mind that most doctors are not scientists.

You refer to some recovery criteria for the PACE trial where patients can enter the trial get sicker and still be classified as recovered. It is important to note that the original published protocol didn’t allow this to happen. At some point after the trial they changed their definition of recovery. We don’t know when or whether it was approved by the trial stering committee or the ethics committee who approved the original protocol. Someone put in a freedom of information request to ask about timings of the protocol changes but they claimed it was harassment and got away with that claim.

The lancet article talks about normal range. Later they published a ‘recovery’ paper in psychological medicine. They give reasons for changing the protocol definition but the reasons they give for one measure (the SF36 physical function scale) are wrong. We know this because we have been able to get hold of the UK population data they quote. The psychological medicine journal and the authors are not interested in correcting this error.

They use the Chadler fatigue scale for another measure but use two different scoring systems. These are incompatible in that it is possible for patient A with one scoring system to be more fatigued than patient B but the other way around for the second scoring system. The scale is simply not fit for purpose. Unfortunately a recent Cochrane review is using this scale – I would have expected better!

In there recovery criteria they also look at whether patients meet their ‘original’ definition of CFS (the Oxford criteria) but they use slight modifications. What is particularly strange here is that many patients who don’t even meet their very low ‘normal range’ also don’t meet their modified Oxford criteria.

They refuse to release data according to the original protocol. In fact I believe they have tinkered with all the primary outcomes including the definition of harm as well as the recovery (secondary outcome). Yet when patients complain they are accused of harassment and generally slagged off in the press. The medical profession in the UK simply don’t seem interested in raising the standards for ME research and that includes sense about science and the all trials campaign. Despite this being a prime example of failures to publish data according to the protocol they have been strangely silent.

Re Climate change, I’m not a sceptic but the scientific community has still been guilty of overclaiming re climate change too, eg the IPCC 2007 report’s infamous claim over Himalayan glaciers melting wasn’t based on peer-reviewed research (eg http://www.theguardian.com/environment/2010/jan/20/ipcc-himalayan-glaciers-mistake). Such overenthusiasm is simply bad science that undermines a strong case overall. As you say, more humility would go a long way.

My own experience with shoddy science in ME/CFS, and its impact on me and other patients, also changed the approach I previously had to science myself, which was perhaps to ready to accept ‘experts’ word for it.

An excellent account, that matches my thinking about science after both my son and then I went down with ME.

As a maths teacher, I saw that few people went into medicine with maths as their strong subject: many of course did not even take maths to A-level standard. Yet medical analysis needs both a sophisticated level of statistical techniques and a basic understanding of what assumptions underpin them. The PACE trial was, from that point of view, a mess, yet there was no challenge from the medical community, and challenges from patients with strong scientific backgrounds were dismissed as “vexatious”. It wasn’t as if the faults were highly sophisticated: it is easy enough to understand that it is utterly wrong to set a “recovery” level at a standard below an entry level, which was described as showing severe disability. I can only guess that most doctors see the numbers and just skim over them. I simply do not think that the medical profession as a whole has the mathematical or statistical confidence or skills to describe itself as “scientific”, and the situation appears to be even worse when psychiatrists and psychologists are involved. (There are, of course, exceptions, but apparently not enough to wield influence.)

Thank you for this thoughtful piece. As someone who has struggled with CFIDS for 23 years, I concur with your arguments, tone, and takeaways.

I did, however, have one question–has there been any data (I won’t use the word “study”) about heritability of the disease? The little bit I’ve been able to find (e.g. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2066085/) is similar to the rest of the literature; rife with mis-definition (e.g. clinical depression) and contradictory.

I know this question (and the entire field) is open to debate and interpretation but any resources of feedback would be appreciated.

“The little bit I’ve been able to find (e.g. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2066085/) is similar to the rest of the literature; rife with mis-definition (e.g. clinical depression) and contradictory.” That is a sadly fair characterization of the literature, and heritability is no different. I was told by Nancy Klimas that children of women with ME seem to be OK, for whatever that’s worth. Congratulations on your baby! I wish you and your family great health.

There is evidence that one of the prime suspects in virally-caused ME or CFIDS – HHV-6 – can actually attach to a patient’s chromosomes and then be inherited in a “Mendalian” fashion – that means, inherited like blue eyes or brown hair. It is called “chromosomally integrated HHV-6,” or ciHHV-6). The references are here:http://hhv-6foundation.org/associated-conditions/chromosomally-integrated-hhv-6

And there is a new study being conducted by the Simmaron Research Institute, with Dan Peterson and Paul Levine, investigating autoimmunity, genetic predisposition, and also a possible relationship with non-Hodgkin’s lymphoma.

Personally, I have to say that while I know of cases where a child apparently did inherit the disease from his/her mother, for most of us, that has not been the case. My opinion is not particularly scientific, but I didn’t want you to worry. Just keep an eye out for symptoms, particularly near puberty. (Children with ME/CFS seem to have more problems with headaches than adults.)

Thanks for the comments. Yes, the way I figure, it’s like other “major” auto-immune disorders and that, roughly, there’s about a 1 in 20 to 1 in 30 chance of CFIDS manifesting at some point in the child’s lifetime.

Years ago — perhaps at the Ft. Lauderdale IACFS — I saw some data using Utah’s well-tracked and large families. It showed a tendency for the disease to strike related more than unrelated persons; i.e. some family vulnerability. But what this actually stands for I have not seen. Could be a genetic vulnerability to immune system damage, or a genetic vulnerability to being damaged by neurotropic viruses, or what Mary Schweitzer discusses. Or other things. Unfortunately I don’t know who did the study or where; only that the family data was from Utah.

I would like to second what Graham Mcphee wrote. I was a published and tenured college professor when I collapsed with the disease Myalgic Encephalomyelitis (ME) 20 years ago. I, too, have been appalled at the sorry state of statistics in the medical “science” regarding the diseases ME and CFS. Not only are most clinicians ignorant of basic rules of statistics – so also are a surprising number of researchers and government officials. The former head of the CFS program at CDC once told me that he could not add variables to a data set he was putting together (via a telephone survey) because he would “lose degrees of freedom.” There are no degrees of freedom in a data set! And, hopefully, CDC would have the means to put together a data set with enough observations to afford a few variables. Instead, data about potential (and suspected) co-morbidities was lost.

Two fallacies I frequently see in the literature involve small sample studies and correlations. CDC has published research on CFS using very small samples that supposedly “proved” a given hypothesis about CFS was invalid. Aside from the longstanding rule in statistics that you cannot “disprove” a theory that way – to the extent you might be able to structure a model to be able claim it, you can’t do it with 26 observations! Then many studies use simple correlation to “prove” causation. My favorite is one that “proved” that “catastrophising about pain” (worrying about pain) CAUSES pain. It was a simple correlation, and it apparently never occurred to either the researcher nor the journal editors that perhaps experiencing a lot of pain might make a person worry more about pain than people who don’t have much – that is, the direction of causation might be reversed. (And, of course, when A and B occur at the same time to an extent it is statistically significant, there could also be event “C” that is causing both.)

Another problem is that the literature in ME and CFS is bifurcated to a degree I have never seen in research before. The psychiatric literature never references the extensive and growing literature into biomedical evidence or potential biomedical causation. If you ask that the authors take this extensive biomedical literature into account, you will get a lecture about being prejudiced about mind-body dualism. If anything, it is the so-called “biopsychosocial” school of psychiatry that is obsessed with mind-body dualism, refusing to footnote anything that is not in a psychiatric journal. Yet they get away with this – in both the court of medical science, and the court of public opinion.

Part of the problem, I am convinced, has had to do with ridiculously high paywalls on all of the major journals in medical science. That, coupled with time constraints for physicians, has led to abstracts being the only thing anybody ever reads – and abstracts (at least with regards to ME and CFS) increasingly bear little resemblance to what is actually in the article. New e-journals such as Plos One help with this somewhat – but the major research journals are still effectively off-limits. Journals must find a new way to fund themselves – published research must be openly available to ALL.

Finally, medical science as a scholarly discipline must take more care in requiring footnotes with ALL the pertinent literature – including references to dissenting research. Bibliographies must also contain references to ALL the published peer-reviewed research – again, including research that comes to the “wrong” conclusion. The author should be required to explain – at least in a footnote – why he or she has dismissed dissenting scientific literature – and in a more scholarly fashion than accusing one’s opponents of Cartesian dualism.

In scholarly research, there is to some extent no such thing as a truly blind review. Most scholars who are called upon to review an essay for publication can generally guess who wrote it. If not, then they may assume that nobody important wrote it. It is only human nature to further assume that an important person is not going to make elementary errors of logic or evidence – but that is definitely not the case. (One hopes that referees are not afraid that “important” researchers will find out who they are and retaliate against any criticism.) If the Lancet has been flooded with research that does not stand up to rigorous review AFTER the fact, that tells you a lot about how rigorous the pre-publication reviews were – or were not – in the first place.

In short, there is no easy fix for this problem. It requires going back to the basic rules of scholarship – know the literature, and use footnotes. Make all the literature freely available (as they once were at university libraries). Journals such as the Lancet must publish more surveys of the literature – or they won’t get written. The rules of replicability in scientific research should be followed. Any authors refusing to share their data should not be published, period – if the article is already published, it should be retracted unless the authors agree to share data. And journals must use more researchers who may disagree with the authors. No one, no matter how famous, should be above the rules.

Adhering to basic rules of scholarship takes time and effort, but they are there for a reason. If rigorously followed, this “problem” would shrink considerably. Ultimately, however, rules alone cannot completely ensure that published research accurately represents what is claimed. That will require a return to basic integrity on the part of all involved, and a culture that values integrity over Important Discoveries – or profit.

Nice essay. Thanks, Julei. My experiences are similar. However, I also come at the question of “who and what to trust” from a political perspective. I once was quite trusting of “government” and “authority”, and experience has since caused me to be suspicious of “corruption”. And, the notion of “corruption” obviously extends into the fields of science, medicine, and “higher education” (as well as “the media”). I could be wrong, but it does seem that things have gotten worse in the last few decades — decades which have been under the influence of the ideology of “selfishness is good”. As to GMO’s, I am basically with you, that they are probably “safe to eat” (though this is really a substantial unknown), but that does NOT mean that they (and the corporations which promote them) should be using them — GMO’s are effecting cultures and the environment, way beyond the simple matter of food-safety. Take care.

When you start looking you will find that the medical system and medical science have been corrupted beyond belief. Keep in mind that this is not new. The antibiotic manufacturers persuaded the FDA to disapprove all competitors in the 1950s, which is why herbs, ozone, colloidal silver and other useful substances are now looked on with horror by virtually all allopathic physicians. And in recent times the EU has done even more to make them inaccessible than the US. However, the PACE Trial and the psychiatrists (Peter D. White, Michael Sharpe, et alia) who turned Simon Wessely’s fantasies about M.E. being psychogenic into prominent careers and very profitable consulting businesses are the likes of something not seen since Hans Christian Anderson’s emperor turned up with no clothes on.

Thanks for this. I hope it is widely read, it deserves to be. One of the ways CFS has changed my whole outlook on published science papers in the major journals was the discovery that when papers about ME/CFS are submitted for peer review for publication, the peer reviewers can be biased to the extent that any papers that challenge their views do not get published.

Interesting article. As a chronic pain physician a lot of the points about ME/CFS also apply to fibromyalgia.
I’ve had some recent success in some of my FM patients with low dose naltrexone 4.5mg OD, based on the recent trial by mackey and younger from Stanford. Most noticeable is that often the patients energy and mood improve significantly more than their pain (which also improves). The mechanism and symptoms would also seem to be useful in ME. Naltrexone antagonises the TLR4 Receptor which mediates the immune mediated “sickness response” (pain, low mood, low energy) seen in FM. I can’t help but wonder if this would help In ME. it’s certainly a cheap, low risk thing to try.

LDN does indeed help some patients with ME/CFS. There seems to be a huge amount of variability in responses among patients to most any treatment, and LDN turned out to do essentially nothing for me. The big answer for me turned out to be avoiding mold.

I agree with Alex Young. This is a great essay. The only thing I would add to it is a bigger distinction between “Real Science” for which I have a great respect and the “Junk Science” that is way too influenced by money and politics.

And it does make me crazy when people try to frame discussion into polarities of trusting science versus being ignorant Luddites. Hey, reality is more complicated.

How about coining a new term “Healthy Privilege” That is the ability of the healthy to ignore the deficiencies of our health care system and medical research industry.

I have a Master’s degree in Toxicology and Nutrition, and had a 12 career in pharmacovigilance. I was always the person who saw science as the brilliant answer to (almost) all questions. Something, not infallible, but brilliant, amazing and practical. After having my own (not-so-serious) health challenges, I realized its painfully limited scope in many areas.

Now, from my new perspective (which still strongly respects science), I see a serious lack of the people behind science (scientists/medics) to acknowledge its limitations; a lack of transparency of potentially negative outcomes; and the dismissal of someone’s own experience where they were harmed by a medical intervention. Complete dismissal, like what the person is saying is physically impossible and they’re completely lying. It shows extreme lack of compassion (or even really listening) to a fellow human being. Seems like a very defensive reaction when someone questions a scientist’s/medic’s knowledge or authority. It’s a terrible way to treat people, and I see this as a huge diving board for people to get off the “conventional” medical stream and head right over to CAM.

“There’s no credible scientific position that climate change isn’t happening or isn’t caused by human activity. But with GMOs, there are so many different facets to deciding whether they’re a good thing and whether it’s a good idea to eat them. ” According to whom? You’re stating this as fact we should just accept. As far as Roundup/glyphosate etc….this is the same dishonest argument I see from the anti-biotech crowd all the time. Roundup has been around for a while and isn’t exclusive to gm. and please don’t get me started on vaccines. i’m disappointed in this article.

Monsanto will tell you that when farmers plant GMO crop varieties designed to survive liberal use of Roundup the sales of Roundup increase. In addition, due to pollen drift and Monsanto’s success in suing farmers in US courts and/or imposing legal costs farmers cannot bear when their crops become contaminated by GMO, all of the United States will soon be Monsanto and Roundup territory. Perhaps you are resistant to a bit of Roundup in your supper, but others may not be.

Thank you for your honesty and nuance here. I am sorry for your suffering but grateful for the compassion it has given you. I have endometriosis that has gotten worse instead of better since having my son in January–you know, contrary to the medical “fact” that pregnancy cures endo. I really hear you on having to fight for understanding when there is little or incorrect research on something that impacts your life. May there be better resources soon!

This is just so damn edifying. So much of what Julie says here mirrors my own distrust of the dogmatics still so inherent in the practice of science that many people involved with it still cannot see, or don’t want to see. It’s a little disturbing to me these days when I see some people who appear to be so wedded to science as a worldview rather than a wonderful method of gaining more knowledge about the world that they cannot (or will not – tenures are fragile) examine its structures. Just shows how much money can corrupt a field, can silence its practitioners. The sooner we get to the bottom of the control our trickle-up financial system has on every facet of our lives, the sooner we can regain some freedom.

Totally agree. I personally believe that ‘Chronic fatigue syndrome’ exists only in the ‘doctor’s head’. I think it’s a lame duck diagnosis given for a group of symptoms that science (or doctors) cannot yet explain. I think doctors grossly overestimate where science has reached in understanding the human body (20,000 proteins – do they really think we know the role of each one of them, or how they work together, or how their functions change with environment?). I can put forth many potential causes for fatigue:
1) There are hundreds of proteins on the cell surface, against which you could potentially have an autoantibody, and whose effect at the synapse you have no means to gauge at present. You only know the few common ones. (And new antibodies are still being discovered in case of myasthenia)
2) In case of the brain, there are no methods available currently to quantify neurotransmission (No means to evaluate synaptic parameters like quantal content, release probability etc.). If lack of oxygen can cause a stroke, potentially anything could cause synaptic fatigue (oxidative damage, defects in vesicle recycling etc.)
But doctors wouldn’t think out of the box – they just want to label it ‘psycho’ and be done with it. Because they’re ignorant, incompetent, apathetic idiots. So yes, after being at the receiving end of their ‘service’ for 7 years, I HATE neurologists (except the one who finally diagnosed and treated me for periodic paralysis) and wouldn’t believe any of them.

“I am an Incline Village Survivor and original prototype for CFS, and I can tell you about it”

When I agreed to assist in starting this syndrome, my first thought was “Wow! Who wouldn’t want to talk to someone that started a syndrome. I know I would. I’d have LOTS of questions.”

The odd part is… no one ever does.
In fact, the words seem to make people so angry that they refuse.
We never had any confusion over the syndrome. People only generate their own uncertainty by failing to find out the reasons why this syndrome was coined.